Wednesday, 27 June 2012

Story 1 - ME related

Like many people with (and without) ME I have little time for psychiatrists. There are exceptions and I've already said that Dr Munro, the Durham University Medical Officer remains one of the most wonderful doctors (or people) that I have ever met. I am eternally grateful for his kindness, support and wisdom.

My new GP, in a village outside Guildford, decided I needed to see a psychiatrist. Something many ME patients will understand, having been there themselves.

I was dispatched to see one somewhere in Guildford. I was 28. I don't recall much of what was said, but I recall him vividly. Smoking wasn't banned in those days and he was the only person I ever met who literally chain smoked. His hands shook as he lit each new cigarette from the previous one. I remember wondering to myself who really needed a psychiatrist.

His report was sent to my GP who duly read it out to me. It said that "There is nothing whatsoever the matter with her. She should keep away from doctors and mustn't be allowed to user her intelligence to discuss it."

Story 2 - Nothing to do with ME

This has nothing to do with ME. Nothing to do with health or medicine. It's work related, but I have to tell you, cos it's just so funny.

After being employed part-time for a few years, and being sacked twice for being off sick (surprise), I decided, around 18 years ago, that self-employment was the way forward. I remain self-employed to this day.

I set up a home office and started offering secretarial services, whilst at the same time doing some temping through a local agency. The agency had the local Health Service contract and I was a regular temp at several of the mental health units. Lovely people and I loved it there. The time came when the Mental Health Authority decided to put together it's own bank of temps. It was suggested that I apply. I was offered an interview.

A little background - the Mental Health Authority had 2 units in Guildford and several others spreading west to Camberley.

I was summonsed for interview at 9am in the morning at Brookwood. The interviewer was ......................................... A PSYCHIATRIST. Clearly interview techniques are not on the curriculum at psychiatrist school.

He solemnly explained to me that the job would mean travelling to different locations, "would that be a problem". I managed not to say, well I've driven from Guildford, what do you think. Equally solemnly I said that no, it wouldn't be a problem.

He then explained that the job meant starting at 9am. Would that be a problem. Again, I managed not to say that it WAS 9am and I was actually there! Again, I said that no, it wouldn't be a problem.

Then he said to me "how do you feel about working with mentally ill people". I just about managed not to say "oh my God, I didn't realise that's what you did in a mental health unit", and instead explained that I'd been working with several mental health units in the area over the last couple of years.

Then, he fixed me with that solemn stare that only psychiatrists can managed and asked me "if I were to ask your colleagues about your ability to work as a team secretary, what do you think they would say to me". I explained that all my office experience, including whilst temping, had been working as the only secretary or with just one or two others. (He did have my CV, after all!)

In case I was a bit stupid, he fixed me with the same solemn stare and solemnly repeated the question, word for word. "if I were to ask your colleagues about your ability to work as a team secretary, what do you think they would say to me".

This time I cracked. I stared him straight in the eye and said "I don't know, you'd have to ask them".

Needless to say, I didn't get put on the bank of temps. But I've many a good laugh at his expense over the years.

At the age of 18 I went off to university in Durham. The first 18 months passed without incident, then in February of my second year I went down with flu. I was due to go and visit an old school friend at another university. After a few days of being ill I walked into town to buy my ticket at the railway station. I got about half way, started feeling really weird and had to return to my college.

This pattern continued for several weeks. I'd start to feel better, walk into town to go to a concert or visit friends in another part of the university, start feeling really ill and return to college.

This is all a long time ago and the chronology of what happened has been partially lost in the mists of my now ageing brain!

My university GP couldn't find anything wrong. I returned home for Easter, where my own GP also couldn't find anything wrong (no surprises there").

At the start of the summer term I returned to University. I even managed to take my second year exams and get the equivalent of 2.2. Goodness knows how I did that, but I did.

A Shining Light

Meanwhile, I was referred to the "University Medical Officer". He was a psychiatrist. (If you are an ME sufferer and you just read that, I imagine that you have just gone all hot and cold. I know what you are thinking and I'll tell you more about an encounter with another psychiatrist later.) He was called Dr Munro and he was a truly wonderful man - I sincerely mean that. He listened to me and for my remaining two years at university was my most ardent supporter and was always willing to come and see me in college at the drop of a hat. He gave me advise that remains with me to this day and, I suspect, new a lot more about my condition than he was ever willing to say. Remember, had barely been heard of in 1976.

He was the first person who realised that my illness wasn't psychiatric it was real. Initially (as he later told me) he believed that was something seriously wrong with my heart. He sent me home with a letter telling my GP to "for God's sake do something about it".
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So, I returned to my GP. He referred me to Kingston Hospital, which was being rebuilt. The cardiac unit was out of action so the consultant, who told us he was due to retire, came to visit me at home.

Ok, here we go again. His diagnosis? "You're suffering from nervous exhaution", he said. In my (still) innocence (but learning) of how to handle doctors I asked him what could cause that, as I had no idea what he meant. He fixed me with a pitying stare, worthy of any psychiatrist (ooooooo - I must tell you both my psychiatrist stories) and said "I don't know, you tell me."

This was on a Thursday. I went away for the weekend with my parents, who owned a cottage in Dorset. By the time we left on Sunday, I really was suffering from nervous exhaustion as I spent the whole weekend worrying about what it was that I was worrying about. I vividly remember packing a bag in my bedroom and suddenly saying to myself "this is stupid. I'm giving myself nervous exhaustion."

At some time I was then referred to a Cardiac consultant at St Thomas Hospital in London. I saw him privately and he too was a lovely man. He was always reassuring, always listened to me and, in restrospect, I realise he knew more than he was, perhaps, able to tell me, given the state of knowledge of ME at that time.

I remember him telling me that conditions like mine usually happened when people were in their 20s and 30s, that they knew very little about it and he was relying on me to tell him. He never mentioned ME. At that time I had been prescribed beta blockers to calm down my heart which, when taped for 24 hours, had been found to be doing 120 beats a minute when I was asleep and 180 a minute when I was awake.

I had also been diagnosed with a potentially over-active thyroid. I know I was prescribed something which meant I had to return to my GP for a periodic blood tests over 3 months. At the end of the 3 months he asked me could I "put your hand on your heart and say you feel better than you did 3 months ago". I couldn't, because I didn't.

His face fell, he instantly lost interest and when I asked him if I should increase the dose of any of the medication I had been prescribed he barked at me that "the idea is to take you off them, you know, not for you to take more of them." I was advised to return to university. I think that was the last time I saw that GP - I was starting to learn!

During the next two years (I had to repeat my final year, although I was never well enough to take my final exams. I just believed at the time that I had to try repeating the year that I had missed most of as if I didn't I might always regret not having tried.)

Here we go again

Then, in my last year at university I hurt my neck. This wasn't the first time, I'd first had problems at the age of 12 or 13. You guessed it - I went to my GP. I'd changed by then, to another GP in the same practice. He turned out to make the first one seem like an angel with wings and a halo, but I didn't know that then.

He wasn't interested and told me to take pain killers. This went on for a year or so, with headaches that went on for days (whilst also having ME) and finally I asked him to refer me for an x-ray. He did, but informed me that it showed nothing.

Then, for the first time, I heard about osteopathy. I went to see an osteopath who, whilst apparently attempting to pull my head right off, informed me that I had "twisted one of the vertebrae in my neck".

Ok - you guessed it. I returned to my GP. He shouted at me. "How dare you go and see an osteopath." "You could have had cancer.....etc, etc, etc". I stared at him and calmly said to him "but you told me there was nothing wrong with me".

To this day I have back and neck problems, kept in check by McTimoney Chiropractic - a technique I discovered about 20 years ago after having got to the stage where I literally wouldn't let anyone touch my back and assumed I would have to live with severe back pain for the rest of my life. McT Chiropractic is my miracle. If only something similar could happen for ME.

...... And Again

I was left taking high doses of beta blockers whilst simultaneously being told by my GP that there was, in fact, nothing wrong with me.

Several times I asked him what the side effects were - once he lost his infamous temper and shouted at me "there are no side effects from these pills".

This was in the days before the internet. Although I was unconvinced I had no way of finding out if what he said was true. Medicines didn't include comprehensive patient information leaflets, as they do now.

Anyone who has taken beta blockers will know just how they really make you feel. It took another doctor to finally enlighten me.

...... And Then??

At the age of around 26/27 I started getting severed abdominal pain again. Obviously not my appendix, I didn't have on by then! My GP thought I might have an ovarian cyst so sent me for a laparoscopy.

Before doing the operation they did the usual pre-operative testing and realised (as I always put it now) "oh s**t there's something wrong with her heart" I was told I'd need to talk to a cardiologist. A young, newly qualified man duly arrived. I explained the problem to him (I have a slightly dodgy valve, and an odd T wave). He told me that the high dose of beta blockers I was taking could cause a range of side effects and duly listed almost all the symptoms I had.

I returned from hospital to Guildford. I was in for 2 nights, during which time my parents moved from Surbiton to Guildford. I wasn't well enough to live on my own or work so was still living at home.

It didn't take me long to make the decision that I had to cut down on the beta blockers. By then I changed GPs. Did I get a better one? What do you think? This one was young and rude, as opposed to old and rude. I asked him for advise on cutting down on the beta blockers, but he simply informed me that I wouldn't be able to. I was growing up and learning by then - and that was a red rag to a bull. Over the next few months I cut them down and stopped taking them. I've never taken them since. They were no longer necessary and had been making me so ill.

I finally felt that I was well enough to get a part-time job and found a company just down the road who were looking for an office worker 3 afternoons a week. I got the job. It paid less than I was getting on the dole, but I couldn't wait to come off it. The medical officers I'd seen were, to say the least, just as rude as my GP. But that's all another story.

My GP proceeded to tell me that if I wanted him to treat me I "had" to see the cardiologist in Guildford, not the one I'd been seeing in London. He later denied having said this. So, off I went to see the cardiologist in a now defunct and very run down hospital in Guildford. They weren't interested in seeing me and I wasn't interested in seeing them. There is something "wrong" with my heart, but it's minor. I tried to explain to the doctor about the total exhaustion I suffered from. He just sneared at me and told me that he got tired too and at the end of a 12 hour shift all he wanted to do was sleep too.

How wonderful to be able to work a 12 hour shift!

Now, I have to tell my psychiatrist stories. One is ME related, and comes next. The other has nothing to do with ME. In fact it has nothing to do with illness of any kind. But it's hysterical and a little light relief is always good.

There seems to be a perception in the press that mis-diagnosis, poor service and rude treatment is a new phenomenon, fuelled by the under funding of the Health Service.

My experience is somewhat different. I should add, in case anyone works out who I am, that I was brought up in Surbiton and then lived in Guildford. Most of the stories here will relate to those times. I now live in a rural county where the services and attitude of almost everyone I have come across are poles apart from the attitude I experienced before. There has been one exception, but that's for part 2 in the next post.

My mother started making me go to the doctor unaccompanied when I was about 17. She couldn't understand that my reluctance to go without her wasn't due to shyness or cowardice it was simply due to the appalling attitude of my GP, whose name mercifully escapes me. Two things happened to me at the age of 17 (pre ME).
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Symptoms

1) I "did something" to one of my big toes. I was in London one evening with my family, wearing boots. I stepped of an underground train and felt as if I had trodden on a stone. The feeling and the pain remained with me as I hobbled all evening. The next day my toe was swollen to twice its size and black and blue. A few days later I visited my GP.

Misdiagnosis

His diagnosis? "You've got hard skin", he said. That was it. The swelling subsided but the pain remained - for two years. I couldn't wear anything other than flat shoes.

Around a year later I went again. He asked me "have you tried resting it for a week?"

Now, you might think that is a stupid question to ask of a now 18 year old girl. Quick as a bunny I pointed out to him that I had been in hospital in the Autumn for a week when I had my appendix removed. (and that's story number 2!)

That Autumn (18 months after first hurting my toe) I went to university. There we had to register with a local GP. I seized the chance and went to see him. His stunning pronouncement? - This one deserves flashing lights, but it will have to make do with it's own line and coloured text:

"Come back when it's so bad you can't walk on it at all."

Yes, I promise you, that's what he said.

Eventual Diagnosis

The Christmas holidays came and I went back to my wonderful (not) GP. This time I knew what I wanted, so I insisted he sent me to the local hospital (now gone) to see a consultant.

In one day ( because I was due back at uni the next day) I saw the consultant, had an x-ray, then had another appointment with the consultant who explained that underneath the joint where your big toe joins the foot is a bit of tissue akin to your keencap. I had misplaced this, which is why I felt as if I was walking on a painful lump for 2 years. He advised that I wear an insert in my shoe. I was measured up for this the same day and wore it for several years. It cured the problem.

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Symptoms

The second thing that happened when I was 17 was the onset of severe pain in my lower right abdomen. Initially it was controlled with painkillers and came and went for a few months. I vividly recall being in agony whilst on our family summer holiday in Scotland.

Misdiagnosis

A few weeks later I decided to go to the doctor. He didn't examine me and pronouned that I probably had period pains. (Women's problems are a wonderful get out for GPs of teenage girls).

Come the Autumn (we still lived in Surbiton) I went to walk into Kingston one day. I got part way and the pain became so intense I had to stop and catch the bus home. Back to my GP where I explained that the pain had been so bad I hadn't been able to walk any further. His reply? He sneared at me - "What do you mean you COULDN'T walk???" It wasn't a question, it was a calculated put down.

A couple of weeks later my mother insisted I went again and came in with me. By then he was starting to realise that maybe, just maybe, there was a problem. He said that he didn't think it was appropriate to refer me for surgery as I "might not have appendicitis and if they removed it they could be doing the wrong thing". It didn't, apparently, occur to him to examine me even then.

Eventual Diagnosis

Another couple of weeks passed and I was taken bad on a Sunday. My mother phoned and a locum doctor came to our house. Guess what? More flashing lights and sound of trumpets.............

He Examined Me

Yes, as I'd worked out for myself by then, I had appendicitis. He said I wasn't sufficiently bad for him to call an ambulance but he would refer me to the local hospital for an appointment with a consultant.

The Consultant (said with a sarcastic sigh)

I was still 17 and innocent of the fact that seeing a consultant is a game that has to be played. I didn't know the rules and took his opening question at face value.

"What's wrong with you?" He asked. I simply told him that I suspected I had appendicitis.

Was that ever a mistake!! I was shouted at. "I don't want to know what YOU think is wrong with. TELL me what the symptoms are." He barked at me.

The rest of this story is simple. In due course my appendix was removed, I returned to school and everything in the garden was rosy.

What a performance for the diagnosis of a simple to treat, common ailment of teenagers.